Yeah, he’s mostly fine. I am not fine. This may turn out to be nothing. I hope to God and all the other powers that be that it turns out to be nothing. But if it is something? What then?

Someday, I will learn that when an acquaintance asks me how I am the truth is almost never a good idea.

“How are you today?”

“Ok.”

“Aw, it’s a pretty spring day. Why are you just OK?”

Because I’m waiting to hear if my child has a serious condition and the specialist appointment is still 3 weeks away. Because, I just don’t feel fine today.

I need to let it go. I need to stop the negative cycle so I don’t beat myself up when (hopefully) everything is fine.

The difference between me and some other moms out there? There have been 4 (5 if you count the scary pregnancy) years of moments when a ton of crap wasn’t FINE.

Because I actually like and respect this person, I went with a bit of truth. (mistake)

“Because we have to add a specialist from Children’s to Drake’s care team…again.”

Then, I had to give more of the story than I really feel like telling. I really want to be that optimistic mom, the one who is unshakable and believes the best until the worst is confirmed. Unfortunately, being positive is something I suck at.

When you are a preemie parent, you think that you have that advocacy thing down. Especially when it comes to all the yucky medical stuff. I am learning that I have a long way to go to possessing expert skills.

D’s recent diagnosis raises some serious concerns about potential health issues that may follow him all the way to adulthood. Like pretty much all of the ones he’s gotten or any of our kids have, I guess. I don’t have much to go on yet. His well visit is 3/9. I need to figure out what to ask, what to push for, and when to look at other opinions. I know this is something that can’t just be ignored. The research is scary. The little bit of info I’ve found out about other pediatric patients is scary. Dr. Google is just scary.

I think I naively believed that nothing could really shake me more than his birth. I’m so used to the preemie, hypotonia, and developmental communities having massive resources out there that the void of information I am faced with is just as scary as the panic I’m trying not to have. So to diffuse the feeling of not being able to breathe, I’ll share the mistake I’m able to find some humor in right now.

Don’t forget the snacks.

On Friday, we had our annual eye appointment at the children’s hospital. These appointments always take a minimum of 2.5 hours. I took D to brunch with his grandma and great-grandma right before our appointment. However the 1/4 of pancake, 2 bites of eggs, and 1/3 of a slice of bacon he ate didn’t last long.

I search my giant bag of coloring books, monster trucks, and crayons for the crackers and fruit snacks I had stuffed in that morning. NOPE. Just a juice box. Apparently, all the snacks are sitting in their neat little baggies on my kitchen counter. AWESOME. I try anyway.

“Ok, buddy. Here’s a juice. That will help your empty tummy,” I coax hopefully.

‘Cause that was totally going to placate an already bored and pissed from having the burning dilation drops kid, “I am not THIRSTY, I’S HUNGRY!” He booms.

I stare at him with an “are you kidding me” kind of look on my face because really folks this 1 day from 4 years old little dude weighs a whopping 30.6 pounds. He’s never hungry or never eats when he is.

Then he starts to cry, so I pick him up to try to calm him down while still trying to offer the fruit/veggie juice. I was rewarded with a series of reaching tantrum proportions, “I’S HUNGRY”‘s. After about 5 minutes, a staff member brings me a bag of goldfish crackers, and I thank her like it is manna from heaven.

And because life likes to add insult to injury, his doctor, a teaching professional expert at the #3 children’s hospital in the freaking country apologizes to me for the staff not offering the snack faster because another parent complained that it was sad he had to wait that long. OMG. My mortification over forgetting the freaking afternoon snack almost reduced the impact of the diagnosis. Honestly, I’m still kinda mortified about it.

This week’s illness is a massive head cold. He’s been sick since Friday night, so we’re at the holding him at night next to the humidifier covered in baby rub so he doesn’t cough all night long stage. We missed school again this week.

So far, we have:

Week 1 – Stomach Virus

Week 2 – Went to school both days, ate all his meals and started acclimating to his environment

Week 3 – Fever, runny nose, cough and a mantra of “my ears are stuck”, no school

I have to say, “My ears stuck, Mama,” is the cutest way ever to describe that full feeling your ears get with a cold, but I’m probably a bit biased.

Everyone, from his father to all aspects of his medical team (neonatologist, EI therapists, pediatrician) agreed we were ready to skip isolation this year and try school in January. I had my doubts, but I chalked them up to preemie mama crazy and went along with the plan.

I don’t want to be right.

We selected a school with the smallest class we could find (6 kids). I knew last week at drop off from the red, runny noses that we were probably in for it.

I do wish I could just react normally to sickness instead of feeling like I need to sit up all night listening to him breathe, and freaking out at every moment his breath pauses before the start of a coughing spell.

I left him with Daddy today, and came into work for our monthly staff meeting. I needed the break, and Daddy is just as watchful if not more careful than I am.

Yeah, he was born before his neurological system was fully developed. That’s why you were kicked out of the NICU for being loud. 😛 And it’s what we’re working on in EI every week along with his eating, tone and orthopedic issues.

“I hope he’s not developing childhood asthma.”

His lungs STILL aren’t fully mature compared to his peers. It’s WHY we were on isolation last winter. So yeah, he does get out of breath more easily than other kids his age. His saturation level starts out lower than theirs without being sick.

Or my favorite…

“I thought he was going to catch up by 2. His birthday’s next month.”

…

GRR. Sigh. These are the types of days where I’m pretty sure I could still use some therapy or a vacation. I think I actually miss RSV isolation. I know me from last year would laugh at me, and give me an are you serious look.

There’s a lot of second guessing going on in my house right now. With D’s low birthweight and left c lubfoot, I could have tried to qualify him for early intervention services a long time ago. I asked the questions at his well visits and his first NICU follow up clinic, but since it wasn’t pushed very hard we opted to wait.

Of course, now I have to wonder if we waited too long and that extra year could have helped him. Despite his Neonatologist’s telling me that the work I’m doing with him has nothing to do with his low muscle tone and gross motor delays, I feel responsible.

His appointment for evaluation is set for Monday, so if anyone that’s done this dance before has any tips I’m all ears and eyes. 🙂

To add to the mommy guilt buffet, we went on a tour of his school for next year on Friday and Monday he came down with a yucky stomach virus. Fever, running at both ends, the whole nine yards. I know we’ve been taking him out in the world more after over a year of isolation and he could have picked it up anywhere, but way to make me second guess myself and his readiness universe!

Today, he is playing and resting much better, so I think we are through the worst of it. Just in time for our 2 days to Chicago with Daddy during a business trip next week. It will be our first overnight away as a family that isn’t at a hospital! We’re staying downtown and plan to take a tour of Wrigley Field, visit the Lincoln Park Zoo, walk on the shores of Lake Michigan, go to Navy Pier, and shop on the Magnificent Mile. I can’t wait for our first big adventure!

Today, we used our Zoo membership we received at Christmas for the first time. It was a gorgeous 65 degree day, and Drake just loved being outside and riding in the stroller.

He especially loved the ducks. He makes a sound we are pretty sure is a quack at them. He also was fascinated by the cows. We just did a 2 hour jaunt. Since we have an annual pass, there’s no reason to try to make him do a whole day and everything at once.

I was a nervous wreck reminding the other adults to wash hands and not let him touch surfaces. All I could think about was the fact that we did our job and kept him isolated that first year, but now what will happen.

And I hate it. I just want to enjoy family outings and milestones. I want to let the fear and horror go. It’s time to try to move on somewhat. I know that it is.

A family member was with us. She pointed out a very, very pregnant lady to me and said, “Look at her. Doesn’t she look miserable and ready to pop? Aren’t you glad you never had to go through that?”

WHAT?

I just said, “No, I would much rather have walked around miserable than go through the NICU and not bringing my baby home right away.”

What I wanted to do was slap her.

I have no way of knowing how uncomfortable the 31st through 40th weeks of pregnancy are. I only made it to 6 months, 2.5 weeks.

But I know what it’s like to lie alone in a hospital bed sobbing because you haven’t touched your child that has a tube down his throat helping him breathe as you listen to babies crying in all the rooms next to yours while you try to pump out trickles of milk that just won’t come.

I can’t be philosophical today. I can’t be thankful that my journey wasn’t as hard as it could have been.

All I can do is cry over the fact that I should be celebrating a 1st birthday, and instead I’m worried about my 17lb 14 month old who is refusing to eat again suddenly.

I could keep ranting, but it definitely won’t make me feel better, and it will make me look like the crazy person some people think I am these days.

After the zoo, we went to the grocery store. The awesomeness of doing this mundane errand as a family was ruined for me by the cashier’s oh he’s cute how old?

Yesterday, I received a coupon for a portrait studio at our town center shopping area. Due to RSV restrictions, money matters and my germophobe preemie mama feelings, we hadn’t gotten any professional shots taken.

I realized Drake would be 14 months actual on Saturday and his 1 year old due date is fast approaching. I decided to treat myself early for Mother’s Day and get his portrait done. I picked out two outfits. His unable to be worn to church Easter outfit and a cute dino romper set Nana sent for his birthday.

I put all thoughts (mostly) out of my mind about the germs that are probably lurking where so many other sticky hands have roamed. I did make his appointment for the first slot of the morning, though. It has to be the cleanest, right? I would have loved to hire an independent photographer, but that’s the kind of luxury we’ve given up while I’m working part time to keep him out of daycare.

While we were waiting, another mom came in with a set of newborn twins. She managed her two infant carriers much, much more efficiently than I was managing my wanting to crawl on the floor 14 month old and diaper bag. I didn’t hear what the photographer asked precisely, but I heard 3.3 pounds and 5 pounds and then 5 weeks early. I really wanted to strike up a conversation with her, but I didn’t. I was exhausted, and insanely jealous of her 5 day NICU stay. Crazy, right?

It did make me wonder if other moms feel the same way about my 34 day stay, though. Really except for the separation and the weight gain issues and some pesky A&B’s, our NICU stay was fairly uneventful. Most of our medical episodes have been since we left the NICU behind.

I think I’d probably be a little more on the sane side if I hadn’t had to take a ride in an ambulance with a bluish son due to reflux. My 30+ years of RN nursing and mommy experience mother going white with fear and telling me to call 911 plays in my head all the time as we approach that day.

I wish that lady all the best. I wish I’d had the courage or inclination to strike up a conversation. Next Saturday, is our old due date. How would things have been if we’d gotten this close? Or just 5 weeks closer? What if? The bane of all preemie mamas regardless of course.

In two weeks, we have the birthday party of the little boy who was born to a friend of our family. She was due three days after me, and had her son two days before his due date. They get compared all the time, and it is sometimes such work for me to look away and not worry.

He has come so far, and he does SO SO much. I feel guilty for not just living in OUR moment.

The pictures did turn out fairly good. I spent about twice what I planned on after all. Happy early Mom’s Day to me.

Oh yeah, my mom lesson today was never, ever take a large bag of “props” to a photo shoot for a 1 year old. No clothes that wrinkle or have collars either. Do take another adult and cheerios. I think I can make D do almost anything for a handful of cheerios. Still so much to learn! 🙂

This week I am so thankful for a brave mama in my area who decided to start up a local support group.

I was usually at the NICU during the day, so I didn’t run into many other parents. I definitely had my moments of feeling extremely lost the past year as none of our friends or family had ever had a NICU experience.

That’s something the preemie internet community definitely provides as we share our stories and support each other, but it’s nice to know there’s someone close by that you could invite to coffee if you wanted to.

That’s all I’m going to say about that for now as it’s a small, private group. Anyone in the Cincinnati area is welcome to join who has experienced a NICU stay with their child though so feel free to message me if you’d like to be pointed in that direction.

I had two reminders on facebook today of WHY we have endured RSV isolation for most of his first year. My bout with Influenza A was a scary reminder, too, but these images make my heart stop and are keeping me up tonight.

One was a post on my college band alumni page about a couple who graduated a bit after me that lost their son at only 13 months old after a brief illness. The second was of one of my college roommates full-term infant son with a breathing treatment mask on due to RSV.

So even though the long, cold winter is drawing to a close and spring can be felt in the air. I will not be lazy or forget exactly WHY we are doing what we do. It’s so tempting to go ahead and take him with us on errands, but we have worked so hard to be healthy. He has worked too hard.

And my heart just aches for these families dealing with loss and illness….